The Foundation will fund six new research projects from the Fall 2021 cycle of its Making a Difference in Real-World Bioethics Dilemmas grant program.
The Making a Difference program funds bioethics research projects that seek to resolve current challenges in health care, policy, and research. Grants are awarded twice yearly. Since 2013, the Foundation has funded more than 90 Making a Difference grants supporting bioethics research on a wide array of issues including aid-in-dying, deception in medical contexts, discrimination towards minority clinicians, and responses to the opioid epidemic.
Who should be treated? The ethical challenges of administering opioid agonist treatment (OAT) for people who inject drugs during COVID-19
Roberto Abadie, PhD (University of Nebraska-Lincoln)
Abstract: This project addresses the ethical challenges of modifications in opioid agonist treatment (OAT) during the COVID-19 pandemic for people who inject drugs. While several public health ethics frameworks exist, due to the novelty of the pandemic and treatment needs of PWID, little is known regarding their applicability to OAT. Drawing on the lived experiences of patients, healthcare providers and health administrators in San Juan, Puerto Rico, Dr. Abadie and his team will seek to develop an evidence-based, population tailored ethical framework for the administration of OAT for current and future infectious disease crises.
The Chatbot Is In: Ethics and Conversational AI in Health Care
Matthew DeCamp, MD, PhD (University of Colorado Anschutz Medical Campus)
Abstract: As artificial intelligence (AI)-based technologies are poised to revolutionize health care, one of the most exciting developments has been the development of “chatbots” – computer programs that simulate conversation with humans. Dr. DeCamp and his team will seek to understand the real-world experiences of patients with chatbots, identify critical ethically-relevant aspects of chatbots that AI developers and policymakers must take into account, and examine the normative implications of these empirical findings for transparency, autonomy, privacy, trust, and fairness in health care.
Evaluating the role of ethical, medical, and economic considerations in the suspension of in-person visits to long-term care residents during a pandemic
Jakub Hlavka, PhD (University of Southern California)
Abstract: The bioethical concerns (e.g., autonomy and beneficence) implicated by public health measures in longterm care facilities during the pandemic have not been comprehensively examined. While some consequences attributed to the restrictions are measurable, others (e.g., negative physical and mental health effects on residents/families) have yet to be analyzed and some (e.g., reduced self-agency) may not even be recognized. Dr. Hlavka and his team will develop a more robust understanding of the
challenges associated with visitation restrictions in a multi-method study to determine how better to make tradeoffs affecting the most vulnerable.
Developing stakeholder-engaged ethical guidance for public health wastewater surveillance
James Keck, MD, MPH (Alaska Native Tribal Health Consortium)
Abstract: Wastewater surveillance looks for disease biomarkers to make inferences about the health of communities. Ethical questions arise regarding ownership of wastewater data, obligations to share findings with surveilled communities, and the use of liberty-limiting public health measures based on wastewater findings. Dr. Keck and his team will interview a diverse group of stakeholders using case studies to understand perceptions of wastewater surveillance and map interview data to the Ethics Framework for Public Health to create pragmatic, stakeholder-informed wastewater surveillance ethical guidance.
Peers in Mental Health: Role Boundaries and Ethics
Julia Knopes, PhD (Case Western Reserve University)
Abstract: Through qualitative research, Dr. Knopes and her team will explore how “peers” (people with mental illness who provide services to fellow individuals in recovery) make sense of their complex role as both a care provider and a person with their own health needs. They will seek to expand bioethics research on the ethical issues that emerge when peers cross these boundaries between patient and provider when leading support programs, and directly inform the development of new training programs for peers on role boundaries at Northeast Ohio affiliates of a national mental health organization.
Sharing Electronic Health Information with Adolescents and Parents: Evaluating the Ethical and Practical Challenges
Bryan Sisk, MD (Washington University)
Abstract: The 21st Century Cures Act mandates that hospitals provide patients with access to electronic health information (EHI), including adolescents. Dr. Sisk and his team will seek to (1) identify risks, benefits, motivations, and barriers to EHI access by performing semistructured interviews with 40 adolescent/parent dyads; (2) discern implementation practices for adolescent EHI access at US pediatric hospitals; (3) facilitate a stakeholder Delphi panel to generate recommendations for EHI implementation practices. This project aims to generate empirical knowledge of ethical and practical challenges to adolescent EHI access.
